I feel remiss about not blogging for so long, summer has come and life has become hectic. First things, first, Marty is still on dialysis at home and no transplant yet. He had a rough month in May but things have improved in June. The doctor told us that his calcium and potassium were low causing numerous problems. We have been working very hard to improve these things by changing his diet and remembering to take his phosphate binders. Those pills contain much needed calcium and also help bind any phosphorus he may eat.
We were able to make it to Santa Clarita for two days earlier this month. It was a lot of work to get Marty there but we did. He participated in the Police and Fire games in the bowling category, he ended up placing 7th overall. We enjoyed getting away for two days and staying in a hotel, better than looking at the same four walls.
So far the kids are having a great summer. They have been to several pool parties and fun events already which makes us very busy. We spend lots of time running from here to there and having fun. So far we are jammed packed and looking forward to a busy summer.
We are still waiting and waiting for Marty to be healed. We are trying to not grow weary or faint and hope in the Lord all the way through. It almost seems as if the call will never come and life will never get back to simplicity. We are trying to keep going and be as normal as possible, sometimes it is hard. I have found myself so tired that everything goes out the window. I try to do as little as possible besides things that are absolutely necessity.
If you have been wondering about something, feel free to ask and I will answer.
Sunday, June 28, 2009
Friday, June 5, 2009
Baseball season is over
WOW, what a difference a year makes. Last year if you remember, we were so glad to see baseball season end. We had a horrible coach and team, we had theiving parents and it was ugly. This year we met the most wonderful families, coaches and Team mom Tammie. The coaches taught Conner so much about the game and encouraged him as a person. The Team mom sent email reminders every practice and game. She made sure there was help and snacks each game. We even had a swim party last week just because. I made friends with a wonderful lady Charlene, who became the unofficial snack mom of the team.
In the beginning of the season our team didn't win a whole lot, but the kids had fun each game. Conner was a magnet for getting hurt this year. He got hit by a pitch or something almost every game. I am so proud of my son though, he also grew as a person this year. He pulled the coach aside two weeks ago and told him to let other kids catch. He told the coach he knew that some younger boys wanted to catch and to give them a chance. He told me he knew what that felt like to be told "no" and he didn't want to be the cause of that.
Last night as we were leaving, I was almost crying again. Last year it was pain and this year it was sadness I won't see some of the people again. It was truly a wonderful experience to take part in. Thank you to everyone who made this season special for our family.
In the beginning of the season our team didn't win a whole lot, but the kids had fun each game. Conner was a magnet for getting hurt this year. He got hit by a pitch or something almost every game. I am so proud of my son though, he also grew as a person this year. He pulled the coach aside two weeks ago and told him to let other kids catch. He told the coach he knew that some younger boys wanted to catch and to give them a chance. He told me he knew what that felt like to be told "no" and he didn't want to be the cause of that.
Last night as we were leaving, I was almost crying again. Last year it was pain and this year it was sadness I won't see some of the people again. It was truly a wonderful experience to take part in. Thank you to everyone who made this season special for our family.
Tuesday, May 19, 2009
Bad weekend
Marty passed out on the way into work last Thursday. He drove to work and got dizzy walking in, some co-workers found him a chair and he went out in the chair. He was rushed to the hospital near his work and they found his blood sugar was over 700 and his blood pressure was 212/106.
He had still not been sleeping leading up to this episode. He had some swelling so we used the strongest strength of dialysis solution. Unfortunately that solution is high in dextrose, causing his blood sugar to soar and him to get sick. They were able to treat him in the E.R and get it down.
I was home getting ready to take Conner to baseball when the call came. It was Marty telling me he was "okay" and "don't come". I called my friend Robin who dropped everything to take me to him. His work is 65 miles from our home and quite a drive, I needed to be able to drive him home in our car. She took the kids home with her and let them stay the night. The whole way to the hospital I was texting, calling and updating my Facebook status. It was quite a eye opener to what we will face when "the call" comes someday.
We brought him home and spent the next few days trying to get him back on track. He did get some sleeping meds from the doctor yesterday that seemed to work fairly well. His blood pressure is down now and we are only working on battling the blood sugar numbers now. We are hoping to get this figured out and keep him going until he gets his transplant.
Above all we know God is in control and we are incredibly blessed. It has been amazing to see the support our friends have given us and how God has provided.
He had still not been sleeping leading up to this episode. He had some swelling so we used the strongest strength of dialysis solution. Unfortunately that solution is high in dextrose, causing his blood sugar to soar and him to get sick. They were able to treat him in the E.R and get it down.
I was home getting ready to take Conner to baseball when the call came. It was Marty telling me he was "okay" and "don't come". I called my friend Robin who dropped everything to take me to him. His work is 65 miles from our home and quite a drive, I needed to be able to drive him home in our car. She took the kids home with her and let them stay the night. The whole way to the hospital I was texting, calling and updating my Facebook status. It was quite a eye opener to what we will face when "the call" comes someday.
We brought him home and spent the next few days trying to get him back on track. He did get some sleeping meds from the doctor yesterday that seemed to work fairly well. His blood pressure is down now and we are only working on battling the blood sugar numbers now. We are hoping to get this figured out and keep him going until he gets his transplant.
Above all we know God is in control and we are incredibly blessed. It has been amazing to see the support our friends have given us and how God has provided.
Wednesday, May 13, 2009
Caring and Giving
My friend just commented on me being a caregiver. It sounds weird to me but I guess that is what I am these days. I wish I could sit here and write happy, cheerful, joyous things but right now I cannot. I am happy, joyful and thankful for many things. At the same time I am tired, weary, worn out and trying to not worry.
Last night was a bad night, that followed a bad night the night before that. Marty has not been able to sleep well at night. This has been going on for about four days now, he lays down and gets congested. Then he feels like he is wheezing when he lays on his right side. All together not good when you are already tired. He goes to sleep and the about 2 or 3 am he gets up and is restless beyond restless. I want to help him and cannot help but wake up and try to help him. The thing is, I cannot help him because it is like trying to put a band-aid on a gapeing hole.
We have tried Tylenol P.M., Sudafed, Advil P.M. to no avail. so far. Tonight we are trying a wedge and Benadryl to see how they work. I feel so bad for him, he gets up and goes to work all day long. He gets home at 11:30 pm and sleeps until about 2 or 3 am.
After the long night, I asked for some prayer from friends and church. The good things started to happen right away this morning. First the news, his blood work came back GREAT! he can actually drop a medication now. His dialysis numbers are good and he only has to work on a couple of things.
Then the news, he is going back to working nights. While I miss him, I love that I can sleep and then help him while he sleeps. I will be much better equipped and able to function when he needs help. I think this will be better for the kids too! The have missed their dad coming to functions and spending time with them. He also will be off on Saturdays and Sundays now! So life is good all around.
We are still waiting, keep praying. Thank you for reading and taking the time to pray for us. God is at work even if we only see little bits of it, we know he is there.
Last night was a bad night, that followed a bad night the night before that. Marty has not been able to sleep well at night. This has been going on for about four days now, he lays down and gets congested. Then he feels like he is wheezing when he lays on his right side. All together not good when you are already tired. He goes to sleep and the about 2 or 3 am he gets up and is restless beyond restless. I want to help him and cannot help but wake up and try to help him. The thing is, I cannot help him because it is like trying to put a band-aid on a gapeing hole.
We have tried Tylenol P.M., Sudafed, Advil P.M. to no avail. so far. Tonight we are trying a wedge and Benadryl to see how they work. I feel so bad for him, he gets up and goes to work all day long. He gets home at 11:30 pm and sleeps until about 2 or 3 am.
After the long night, I asked for some prayer from friends and church. The good things started to happen right away this morning. First the news, his blood work came back GREAT! he can actually drop a medication now. His dialysis numbers are good and he only has to work on a couple of things.
Then the news, he is going back to working nights. While I miss him, I love that I can sleep and then help him while he sleeps. I will be much better equipped and able to function when he needs help. I think this will be better for the kids too! The have missed their dad coming to functions and spending time with them. He also will be off on Saturdays and Sundays now! So life is good all around.
We are still waiting, keep praying. Thank you for reading and taking the time to pray for us. God is at work even if we only see little bits of it, we know he is there.
Thursday, April 30, 2009
Tired of trying and tired of crying
You have fed us with sorrow and made us drink tears by the bucketful. Psalm80:5
How long must I struggle with anguish in my soul, with sorrow in my heart every day? Psalm 13:2
When do you stop trying so hard? When do you just walk away and wait on the Lord? These are some questions I have been praying about lately. I am by nature a person who wants all my relationships to be good and really struggle when things are bad. It is hard for me to let go and let God, it is hard for me not to want to fix things. I have for years been waiting for healing in a particular relationship. Waiting for things to change but yet nothing ever does. I finally saw a glimmer of hope only to have that darkened. I have tried so hard for so many years only to be knocked down over and over. My heart aches with the longing to have a close bond like other people do with their siblings.
I have thought over every move and decision I have made. Questioned what can I do different? Wondered why? I have tried harder than most people would. I am just ready to give up and not try anymore.I am tired of trying, tired of crying, tired of aching. It's not fair to Marty or the kids to see me cry and lose time with me over it. I cried most of the afternoon over something and don't want to cry anymore.
My big fear is closing the door and making a mistake. I don't ever close doors on people and have only done that once in my life. I will leave the door cracked but I am not going to be actively pursuing this person.
How long must I struggle with anguish in my soul, with sorrow in my heart every day? Psalm 13:2
When do you stop trying so hard? When do you just walk away and wait on the Lord? These are some questions I have been praying about lately. I am by nature a person who wants all my relationships to be good and really struggle when things are bad. It is hard for me to let go and let God, it is hard for me not to want to fix things. I have for years been waiting for healing in a particular relationship. Waiting for things to change but yet nothing ever does. I finally saw a glimmer of hope only to have that darkened. I have tried so hard for so many years only to be knocked down over and over. My heart aches with the longing to have a close bond like other people do with their siblings.
I have thought over every move and decision I have made. Questioned what can I do different? Wondered why? I have tried harder than most people would. I am just ready to give up and not try anymore.I am tired of trying, tired of crying, tired of aching. It's not fair to Marty or the kids to see me cry and lose time with me over it. I cried most of the afternoon over something and don't want to cry anymore.
My big fear is closing the door and making a mistake. I don't ever close doors on people and have only done that once in my life. I will leave the door cracked but I am not going to be actively pursuing this person.
Sunday, April 19, 2009
Two years ago, when this journey began
I am so thankful for my blogging buddies Andrea and Di. They both have helped me write more to this story by asking questions and I just want them to know I am grateful.
Andrea's questions
When and how did you find out that Marty's kidneys were bad? I know it's been a while, but were there signs or symptoms?
The story began two years ago this month. Marty had been seeing his doctor every few months and finally gotten the insulin pump. His hemoglobin A1C was the lowest it has ever been and things were looking good. We had noticed his blood pressure steadily rising and thought it was due to his high stress job. He started taking blood pressure meds and noticed that he was constantly coughing and congested. He needed a refill on his prescription and told me "Find me a new doctor." which prompted me to ask "Can't you just go to doctor D one more time?" and he said "No!". It was very strange for him to make such a request. A doctor recommended by a friend came into mind and I was able to get him switched that same day.
We went in the next day and one of the first things the doctor did was remove a blood pressure medication he had been taking. Come to find out that it was causing Marty to cough and constantly feel like he was sick. I guess blood pressure drugs ending in pril, can do that to you. That was the first sign the other doctor wasn't on top of things. Then he proceeded to prescribe Marty 3 more blood pressure meds and a patch he would have to wear continually.
The next day was a Wednesday and he got up to go get his blood work done. We got a call at three o'clock the same day from his doctor. He wanted to see us the next morning and we immediately knew it was not good news. Our biggest fear was that Marty's kidneys were failing and it was something that I had long prayed would not happen. He had been so upset about turning 30 a few months before and come to find out that was why. His dad experienced Kidney failure at the same exact age.
The next day came and the doctor confirmed our worst fears, Marty was in End Stage Renal failure. He immediately referred us to a endocrinologist and a nephrologist. He also scheduled a renal ultrasound with dye. Thank God for his mercy, we saw the endocronlogist who confirmed the diagnosis but told us to not get the ultrasound. He informed us that any test that injects dye is very hard on the kidneys. If you already have renal failure it will cause your kidneys to completely shut down.
Besides the high blood pressure, Marty really did not have any symptoms. The symptoms of high blood pressure often mask the symptoms of renal failure. He did have some swelling in his ankles. We just did not notice the swelling because he has thick ankles normally. His other doctor had been sending us postcards informing us that his creatnine, BUN and protein were high. But when he went in the doctor never mentioned renal failure or warned him of anything. The other doctor completely missed the whole thing and dropped the ball. If Marty had not felt he needed a new doctor, who knows what would have happened. We know that God's hand was upon us and leading us to the new doctor.
We were shell shocked, our world crumbled down before our very eyes. Suddenly our future was clouded and we could not see anything very clear. We realized that so many things were now out of our control. We immedialtely started praying and asking everyone around us for prayer. One of our friends told me she was praying "That God would be glorified through Marty." and so far I think that has happened.
We started meeting with a nephrologist and following a strict renal diet. We found out Marty had about 30% kidney function left. We fought hard to preserve whatever was left and prayed that he would never have to go on dialysis. We immediately asked for a referral to transplant and knew we wanted a kidney/pancreas transplant. We wanted to go to LA and even ignored advice that Stanford was better. Only when we got a letter from Stanford did we decide that maybe God was leading us there instead.
We were able to hold off dialysis for a year and a half. One of the only reasons he went on was because he needed a angiogram. The dye in the angiogram would kill off his kidney function and he could only get it once he was on dialysis.
I didn't start blogging about it right away. But once I did, all the posts are labeled either kidney disease or transplant. Someday, we will be able to look back and see all the wonderful answered prayer and miracles that have happened. Right now, we aren't looking back and we are taking things one day at a time.
Andrea's questions
When and how did you find out that Marty's kidneys were bad? I know it's been a while, but were there signs or symptoms?
The story began two years ago this month. Marty had been seeing his doctor every few months and finally gotten the insulin pump. His hemoglobin A1C was the lowest it has ever been and things were looking good. We had noticed his blood pressure steadily rising and thought it was due to his high stress job. He started taking blood pressure meds and noticed that he was constantly coughing and congested. He needed a refill on his prescription and told me "Find me a new doctor." which prompted me to ask "Can't you just go to doctor D one more time?" and he said "No!". It was very strange for him to make such a request. A doctor recommended by a friend came into mind and I was able to get him switched that same day.
We went in the next day and one of the first things the doctor did was remove a blood pressure medication he had been taking. Come to find out that it was causing Marty to cough and constantly feel like he was sick. I guess blood pressure drugs ending in pril, can do that to you. That was the first sign the other doctor wasn't on top of things. Then he proceeded to prescribe Marty 3 more blood pressure meds and a patch he would have to wear continually.
The next day was a Wednesday and he got up to go get his blood work done. We got a call at three o'clock the same day from his doctor. He wanted to see us the next morning and we immediately knew it was not good news. Our biggest fear was that Marty's kidneys were failing and it was something that I had long prayed would not happen. He had been so upset about turning 30 a few months before and come to find out that was why. His dad experienced Kidney failure at the same exact age.
The next day came and the doctor confirmed our worst fears, Marty was in End Stage Renal failure. He immediately referred us to a endocrinologist and a nephrologist. He also scheduled a renal ultrasound with dye. Thank God for his mercy, we saw the endocronlogist who confirmed the diagnosis but told us to not get the ultrasound. He informed us that any test that injects dye is very hard on the kidneys. If you already have renal failure it will cause your kidneys to completely shut down.
Besides the high blood pressure, Marty really did not have any symptoms. The symptoms of high blood pressure often mask the symptoms of renal failure. He did have some swelling in his ankles. We just did not notice the swelling because he has thick ankles normally. His other doctor had been sending us postcards informing us that his creatnine, BUN and protein were high. But when he went in the doctor never mentioned renal failure or warned him of anything. The other doctor completely missed the whole thing and dropped the ball. If Marty had not felt he needed a new doctor, who knows what would have happened. We know that God's hand was upon us and leading us to the new doctor.
We were shell shocked, our world crumbled down before our very eyes. Suddenly our future was clouded and we could not see anything very clear. We realized that so many things were now out of our control. We immedialtely started praying and asking everyone around us for prayer. One of our friends told me she was praying "That God would be glorified through Marty." and so far I think that has happened.
We started meeting with a nephrologist and following a strict renal diet. We found out Marty had about 30% kidney function left. We fought hard to preserve whatever was left and prayed that he would never have to go on dialysis. We immediately asked for a referral to transplant and knew we wanted a kidney/pancreas transplant. We wanted to go to LA and even ignored advice that Stanford was better. Only when we got a letter from Stanford did we decide that maybe God was leading us there instead.
We were able to hold off dialysis for a year and a half. One of the only reasons he went on was because he needed a angiogram. The dye in the angiogram would kill off his kidney function and he could only get it once he was on dialysis.
I didn't start blogging about it right away. But once I did, all the posts are labeled either kidney disease or transplant. Someday, we will be able to look back and see all the wonderful answered prayer and miracles that have happened. Right now, we aren't looking back and we are taking things one day at a time.
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